Celiac disease management involve a gluten-free lifestyle but it’s not as simple as it sounds. Managing celiac disease is multi-factorial and involves addressing a lot. Let’s talk about what celiac disease is, how to manage celiac disease, and the struggles that come with managing celiac.
Celiac disease is an autoimmune disease that involves damage to the small intestine. More specifically, when someone with celiac disease eats gluten, their immune system responds by attacking & damaging the small intestine. This leads to many symptoms and complications.
There are over 300 reported symptoms of celiac disease. Symptoms of gluten exposure with celiac disease include GI distress like celiac bloating, diarrhea, constipation, and more. Additionally, people with celiac may experience tiredness, difficulty paying attention, anxiety, and brain fog when glutened.
With the severity of uncomfortable symptoms and health complications of untreated celiac disease, one might one wonder: how do you manage it?
Managing celiac disease requires a gluten-free lifestyle. This is the only way to prevent the body from attacking the small intestine when you have celiac disease.
I say follow a gluten-free lifestyle and not a gluten-free diet because that’s really what it is, a lifestyle. A gluten-free lifestyle is the best and only treatment for celiac disease right now.
Living gluten-free impacts more than just our plate and calling it a gluten-free lifestyle and not a gluten-free diet does this fact justice. As a reminder, a gluten-free diet for celiac impacts how we socialize, celebrate, connect, participate in traditions, comfort, and nourish ourselves. That again, is why I try to say gluten-free lifestyle rather than gluten-free diet.
And because a gluten-free life with celiac disease impacts so much, there are understandably many challenges to managing celiac disease.
It is not easy to live gluten-free to manage celiac disease. There are many challenges associated with celiac management and often health care professionals and even the gluten-free community can be harsh about people who struggle with sticking to their gluten-free diet.
However, living gluten-free and following a gluten-free diet is not simple. Here are some things to consider when it comes to gluten-free diet challenges:
In fact, research shows that the top celiac disease management barriers are cost, availability, and time limitations.
When it comes to how to manage celiac disease, food availability, palatability, and cost play a big role. This is because the availability of gluten-free foods varies per location, and if gluten-free foods are available, they might not be tasty… and even if they are available and tasty they can be costly.
This all adds up to require someone learning to eat gluten-free, to also learn how to make delicious food based on what’s available and what they can afford. Something that may take time and energy they may feel they don’t have.
Some tips to alleviate this include: making a list of affordable gluten-free foods that you enjoy. Then build a list of meal ideas based on these foods.
Additionally, instead of trying one new recipe a day, try to commit to trying 1-2 new recipes a week so you aren’t overwhelming yourself with new cooking techniques and ingredients.
For more tips on gluten-free budgeting and meal planning, I share a bunch in my Celiac Crash Course!
Another challenge to managing celiac disease is building up gluten-free cooking skills. If you didn’t already know how to cook pre-diagnosis, you have to learn now.
And if you did know how to cook before, it can be a little difficult to adapt and learn all of the new gluten-free cooking techniques. Some of the same strategies above apply to building up cooking skills.
Additionally, you can build up cooking skills to better support celiac disease management by:
Whatever you choose to do to boost your cooking skills, make sure you’re not skipping this essential step of celiac disease management.
Speaking of virtual celiac support groups, access to support for celiac disease management is life changing. Now support comes in many forms, from the support you provide yourself, you support from friends and family, to the support of celiac peers; gluten-free lifestyle support is essential.
It can be the difference between feeling isolated at an event and feeling included. It can be the difference between defending your needs to family members, having it be the expectation.
And interestingly, support doesn’t just make your life easier with celiac disease but it can improve your health. According to the Roseto Effect, support can have incredible outcomes on health.
In an Italian community who consumed what would be largely touted as heart damaging diet, they paradoxically had strikingly low incidences of heart disease… the reason? There was a high-level of social support in the community.
If you’re looking for a boost of support in your celiac life, check out the Virtual Celiac Support Group.
Furthermore, access to reputable resources helps improve quality of life with celiac disease. Not only can the proper resources prevent hypervigilance, overwhelm, and eating disorders with celiac, and overwhelm, but they can make celiac life easier too.
Some of my favorite online resources include Gluten.org, Beyond Celiac, and Celiac.org. These resources provide a lot of free information on celiac living. Please note however, there are some outdated recommendations found on these sites which is why they do not substitute for proper follow-up care with a celiac specialized registered dietitian.
Probably one of the most important parts of celiac disease management is access to follow-up care and support. So many people with celiac disease are diagnosed and sent on their way with no referral to celiac-specialized dietitians. This often leads people to feel alone and rely on social media and other outlets where misinformation and fear mongering run rampant.
Additionally, if you’re not being properly followed with celiac testing, it will be hard for you to know if you are getting better. Especially, if you have silent celiac and can’t use symptoms as a way to assess if things are improving.
Follow-up care is essential to celiac management and it’s important you build up a healthcare team who is wiling to follow and support you for the rest of your celiac life. A celiac healthcare team might look different for everyone but members you might consider include:
Furthermore, lingering symptoms can impact celiac disease management. Often, with symptoms not improving leading to unhelpful coping mechanisms (like eating disorders with celiac) that could worsen things.
If you’re still struggling with bloating, constipation, feeling tired all the time, or other symptoms, it is important you are meeting with a celiac specialist to get to the bottom of the root cause for these symptoms. It’s not normal to have continued symptoms as you heal with celiac, so addressing these things is important.
Last but not least, diet culture with celiac disease can make it challenging to stay gluten-free. It can also make it challenging to heal.
First, diet culture has appropriated the only treatment for celiac disease, a gluten-free diet, as a fad diet for the general population to follow to lose weight.
When that didn’t work, the stole the literal disease process of celiac disease, leaky gut (AKA increased intestinal permeability) and repurposed it as this new health problem plaguing most of the general population. When in fact, leaky gut is a symptom of very real diseases that require proper diagnosis and specific treatment to address.
And lastly, all of this together has provided more options but not without making it mentally burdensome to access. From the celiac guilt of eating gluten-free “processed foods” to the stress of convincing service staff we need them to prevent cross-contact: diet culture has made it challenging to manage celiac disease.
These challenges should serve as starting/check-in point when assessing success of a gluten-free lifestyle. Whether or not someone has support, strong self-care practices, and access to quality food, care, and resources is all important.
Take a moment and reflect…
What celiac disease management challenges do you face? What can you do to ease them?
If you’re struggling with any of these things, I highly recommend working with a dietitian or at the VERY least, checking out my celiac disease crash course that gives you tips and tricks to reading food labels, budgeting, meal-planning and more!